New
Years Day: While some people are waking up to a terrible hangover and a big cup
of coffee, I am waking up with puffy eyes and the hope that the days for Nathan
only get better from here. Nothing else
matters in the world at this moment but him.
Getting to the NICU this morning, I was anxious to see how much urine he
produced with the catheter being in.
From 8 pm last night to noon today, he produced 1.5 mL of urine. That is not a lot and I just got even more
scared. I just wanted him to pee. I never realized how important it was for
people to pee until I got put in this situation. It really is a matter of life and death and
for all those parents out there that get frustrated when their child pees their
pants, or wets their bed, or sprays you on accident because the cold air just
got to them, just feel blessed. I would
love to be having those moments at home with my two sons right now, but I am
here, waiting and praying for pee.
You
notice your interests change as you get older.
I went from wanting Barbie dolls to a kitchen aid, and now all I want is
urine. Other than the lack of urine he
was producing, his sodium and potassium levels were better and his creatinine
level did go up a bit but nothing ridiculous.
His nurse today was Tammy who he had never had before, and she took out
the catheter at noon. At his 2 pm care,
he produced 2 mL and at 8 pm, he produced 3 mL.
So he is slowly getting some out but it still isn’t enough for his edema
to go down.
They
did some more belly x-rays on him but he is so swollen that it is hard to see
what all is happening inside his tiny body. Dr. Valentine came to Kevin and I and told us
that they were going to send the belly films over to Children’s Hospital to
have the Doctors over there look at them and assess the situation. They would determine if it was necessary for
Nathan to get a drain put into his GI track to hopefully relieve some of the
swelling. This in turn would put less
pressure on his lungs. If they felt it necessary to do so, Nathan would get transferred over there to have the
procedure done. Dr. Valentine told us
that she was worried about him because he got so sick so quickly and she
admitted to us that a day or two ago, she was viewing Nathan as a minute by
minute/hour by hour baby. Now she said
that since he is producing SOME urine, he is a day-by-day baby. We obviously will take that over minute to
minute but are going to be striving for week by week, then month my month and
then year by year.
It
seemed like every day was getting harder and harder. Why hasn’t this roller coaster ride gone up
in a while? We are still down and
continue to stay there. I think my baby
is absolutely beautiful, no matter what he looks like, but it was so hard to
see him continue to get more and more swollen.
He couldn’t open his eyes anymore.
You couldn’t even see his eyelashes there were so covered with
skin. His skin just got more and more
raw and flakey. They didn’t even bother
fastening his diaper sometimes because since he had pitting edema, it just
would make an indent. I loved him so
much and since he couldn’t cry, I didn’t know if he was in pain, if he was just
completely numb or what he was feeling.
I just hoped that he knew I was there with him and that I loved him with
every ounce of my body. I would do
anything for that little guy but all I could do was love him and be with
him. I had to leave everything else up
to the doctors. It’s just such a hard
pill to swallow knowing that you’re his mom and nothing you can do will cure
him.
Holly
had him again for the night shift. She
was so kind and sweet to him and thought he was just as beautiful as I thought
he was. When we weighed him at 8 pm, he
weighed 1315 grams which is about 2.8 pounds.
I just wonder what he would weigh if he didn’t have his edema. But other than waiting around for urine, we
just have to wait and see what the Doctors at Children’s say to see if he will
be getting transferred over there in the next day or two. Another day is almost over. Another Dr. Seuss story was read to my sweet
boy. I don’t want these stories to ever
end.
We
survived the first day of 2014, which means we have 364 more days to look
forward too with Nathan. But once again,
that would be up to him.
Nathan’s Nightly Update 1/1/14
Hello!
Last night at 8 pm, Nathan got
a catheter. He did have some urine come out of it. From 8 pm last
night to 12 noon today - he only produced 1.5ml. I was scared. But
we did ring in the New year with him. Kevin on one side of his incubator
and I on the other. Nathan squeezing both our fingers. I, of
course, started to cry at midnight because I want to end 2014 the way I started
it, and that is with Nathan.
But at his 4 pm care he did
have 2 ml of urine so between 12 and 4 he produced a little more. And
then tonight at 8 pm he had 3 ml. Getting better but we will see what he
does in the next day or two. He obviously is producing something so his
kidneys are working a little bit, we just need them to work more and that is
something only Nathan can do. But we don't want him to pee too much (like
20ml+) because then its a chase to get all of his electrolytes, sodium,
potassium, etc back to a reasonable level. Right now, all his numbers
seem pretty good in terms of his sodium, potassium, etc. His creatine
level went up a smidge but nothing astronomical.
At 6 am, he had belly x-rays.
He is so swollen that is really hard to tell what is going on inside of
him. So the Attending Dr. came to talk with us. She said that he
got sick really fast a few days ago and she doesn't know what from. He
became swollen, his kidney's slowed down, his potassium went up at the time.
She said a day or two ago, she was really concerned about his survival
and was taking it minute by minute/hour by hour with Nathan. Now she said
we need to take it day by day. I guess that is a positive thing.
She is concerned about his puffiness so they are going to do another set
of films tomorrow morning at 6 and send them over to the pediatric surgeons at
Childrens hospital (right next door). She said that if the surgeons think it is
a good idea and would be beneficial, to insert a drain into his GI track to
hopefully get rid of some or all of the swelling. This, in turn, will
make it easier on his lungs. This wouldn't really help his kidney's other
than the fact that sometimes increased stress can slow down the kidneys but it
should help his lungs. So if the surgeons look at his films and think it
is a good idea, he would get transferred to Childrens for the surgery. We
don't know if that would happen tomorrow, the next day or days from now.
We will see what tomorrow
brings. Just like when I was pregnant in the hospital, the unknowing of
what the future will bring is the scariest part and that continues in the NICU.
When your little baby's life is on the line all day everyday, everyday is
scary. It will only stop being scary when he gets discharged and is
strapped in a car seat on his way back to Columbus. I know that when
you're a parent, the worries never stop but it will definitely be a different
kind of worry at that point.
Hope you all had a good New
Year!
Attached is just a video of
him moving his sweet little hand. The red thing is his pulse ox.
Love you all,
Kelly, Kevin and Nathan
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